Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

10.11.2008

Disclaimer: Poetics and pretty phrases are not on my top list of priorities this morning. Some of you may have remembered my "typo" in the last update. I stared at that word ("aloud") for minutes and new it wasn't right, but the synapses just weren't firing enough to make the connection. Expect more of those today. My editor has been arrested for protesting McCain's liberal subject/object mis-swapping of me/I.

Writing my first Mel-has-Transverse Myelitis-Update-to-Friends-and-Family last week had therapeutic effects. On Tuesday, I was almost strong enough, neurologically lucid enough, and pain-free enough to walk without my cane.

Shoulda, woulda, coulda...followed up with another update sooner.

The Good Day-Bay Day BluesThe drawback of a "good day" is that the next "bad day" or even "not-so-good-as-yesterday's-kind-of-good-day" bears, not only, the misfortune of corporeal crap but it also launches an emotional spar against hope. In other words, It's been a rough week and I feel like shit to the bone, or I guess in my case "spinal column" would be more appropriate. So, please forgive any undertones of doom and destruction, and indulge my use of profanity. Swearing--like red wine, yoga, oatmeal baths, ambien, the sun, the Sunday times, and tall-dark-handsomes in tight jeans--has healing qualities.

Since Good Tuesday, the days have rolled into Not So Good Wednesday to This F*ing Sucks Friday. My transverse myelitis (TM) has become a recalcitrant puppy, sans cute mucous eyes and dog breath kisses. No, my TM is not house trained either.

I know...enough with the dog metaphor, get to the point Melanie. (Addressing myself in the 3rd person is not a registered side effect of TM.)

The DealThe steroid treatment is not working. My old symptoms are getting worse and my new symptoms are getting stranger. This includes:

Dr. Schwartzmann, my affable neurologist, has upped my pain meds and is readmitting me to the hospital. On Tuesday, I start plasmapharesis (a total plasma transfusion) and IV Ig (immunoglobulosomething-or-other for the immune system). The goal, as I understand it, is to give me all new antibodies that will not attack my immune system, enabling the recovery process to begin.

I'll be in the hospital for up to 2 weeks, and then I believe it's a week of bed rest.

Mom is flying in this Thursday-Monday. And, because my aunt Marci has pined for loquacious Leo's (my jr. cat) early morning face rubs since her last visit, she'll come (hopefully with contraband and sexy pajamas so I can seduce a cute doctor while rockin' a buzz) the following Thursday and stay until I'm released. She's also promised not to bring the movie, Beaches. Phew.

The Moderately Forced OptimismI can't say it enough. I have an AMAZING family (well, at least the Wander side - excluding you cousin-Amanda-from-the-Miller-side of course!) 11.21.08 Amendment: I have since reconnected with many of the Miller cousins. Lisa, Mark, Shelly, you’re in here too. I have a feeling this long lost Miller list may grow, but if it doesn’t I’m cool with that too.

AND amazing friends:I've reached out to my local posse to visit me in the hospital and act as advocates (you need one) on my behalf during the days my family can't be there with me. My hair looks amazing, thanks to my girlfriend and co-Drake-tenant, Tamar. And my toes and fingers are gonna be bangin' too after my mani/pedi this afternoon with Hollis.

Marni is always calling from the 'burgh to translate the Latin lexicon of my day to day into tangible terms. I reconnected with my dear friend and former collaborator, Frank, who unfortunately, through his 5+ year battle with Parkinson's, understands what I'm going through. And there has been so much positive energy sent my way from my peeps locally and beyond.

AND amazing employers and coworkers:My city-dwelling coworkers, including Boss-man and friend Stevie D, John F and Jon E, have been providing door-to-door mel-portation on the two days a week I go into the office. The boys (I am a gender minority) at work are generous with the gimp jokes and that keeps me laughing. The president has pledged her support, made it clear that my job is safe and that I should be focusing on my health, and is arranging for me to get a wireless air port so that I can continue to work while in the hospital.

AND strangers:There have been many, but here's just one anecdote for today's newsletter. Yesterday, just moments after I received THE BEST HAIRCUT EVER from Aja, I had the fortuitous timing of gimping by Bluemercury, a high-end cosmetics store on Walnut Street, while they were offering free Laura Mercier makeovers. And, even though I didn't have an appointment, they invited me in--I think because I looked so neuro-chic (definition: a cutting-edge-fashion combo of waif body, puff face, punk cane, emphasized by a highly stylized manner of walking and speaking).

Dr. Schwartzmann called to check in just a few minutes into my facial transformation. I started crying--luckily before they did my eyes--when Dr. S gave his verdict. And Amanda, who was prepping my skin to receive the makeup (envision pewter lids and lips glace), gave me the most sincere hug before she continued combating my 'roid-skin. In the end, I felt all kinds of beautiful. Amanda offered to visit me in the hospital. I accepted.

OK, glad we're done with this amazing crap.

The ConclusionThis update has taken on more for me than keeping the people who I care about and who care about me informed. Writing about this makes it feel less huge.

Let's hope they give me Ativan again.

xo,Melanie

A Personal PS Thanks to my everyone for your calls and emails. If you want to get in touch or visit while I'm in the hospital, my cell phone does work there and you can find me on the neurology floor. Please understand if I'm slow to respond to your messages, it's not because I think you're voting for McCain, don't have a pleasant phone voice, or have been driven into an irrational 'roid rage campaign against you. Well, you get it...

10.06.2008

My super-duper-long-time-time friend and 24/7 virtual doctor, Marni, asked for daily updates. I may or may not be giving dailies, but since long restful nights of sleep are out of the question right now, Neuro Detour is the new landing pad for occasionally self-indulgent ramblings of rare disease and common sentiment.

A Little History…

Despite the fact that I was a dancer, my body has always invited unusual experiences--hit by a car, car jacked at knifepoint, flat-face-lip-scarring-fall in Germany, cellulite, you know, the norm.

This past labor day weekend, after purchasing a gorgeous turquoise Helmut Lang jacket at 70% off from my favorite boutique, Joan Shepp, I was strolling by the haute and happening weekenders basking in the sun at Rittenhouse Square and strange things started happening to my body—weakness, pain, tingling, loss of bodily control, etc (I'll spare you all the details).

Needless to say I was freaked out and in the following week I saw a new rheumatologist, my nephrologist, and my urologist. (Are you thinking: HYPOCHONDRIAC. I certainly have, but over my past four health-insured years, I actually have been legitimately diagnosed with a slew of less rare diseases for which I’m under ongoing care.) I was certain that amongst them and my goofy body there'd be a reasonable explanation, an adjustment of my meds and diet, and whaaala, back to "normal."

Not quite.

All suspected MS, and implored me to see a neurologist. Though upsetting, I wasn't too distraught (at least that's how I remember it now), because MS is so treatable today that many newly diagnosed people leave mostly normal lives. By my last doc appointment on Friday, I was amply convinced that a little further exploration might take a few hours away from my benign social life, but I wasn’t about to spend the rest of my life pissing myself in public (oops…there’s that little detail I said I’d spare you), so I walked myself over to 219 N Broad Street to take the plunge, so to speak.

Dragging One Foot Forward…

As crazy moon-star-jupiter-alternate-galaxy alignment luck would descend upon me, Dr. Schwartzman, the chair of neurology at Drexel with an irreverent sense of humor that so matches mine had a cancellation for the forthcoming Thursday (otherwise, the wait would have been through '09). I had an MRI with Gad contrast of my head and spine the day before and dragged my scared, weak, right leg into his office.

Within 1 hour of Q&A, pricks, pokes, and other clincial examinations, Dr. Schwartzman diagnosed me with transverse myelitis (without really telling me what it is), a rare neurological disease most often caused by autoimmune disease, and arranged for me to be admitted to Hahnemann Hospital for “3” days (Dr. Schwartzman’s interpretation of numbers is very different from the rest of the world’s) that Monday (which turned into 6 days) for IV Solumedrol, a steroid treatment, and more tests, including a spinal tap, to get a complete diagnosis.

No big deal right? That’s the impression I got. One week on steroid drip, two weeks on steroid taper, and I’d be back with a bladder armed to let everything else loose on the dance floor.

Mom to the rescue. Mom flew in that Monday morning, suitcase packed with sappy foreign films and Beaches (who watches foreign films or Beaches in a hospital?!), extended her flight twice as they kept extending my stay, slept with my cats, as well as my aunt Marci (who made a surprise visit from Montreal and picked up the cutest, comfiest Victoria Secret pajamas for me to wear in the hospital) in my little studio apartment, tolerated my ‘roid rage, and did her best to get some cute residents in my room...for both our benefit...to no avail.

Although I'm not claustrophobic or prone to anxiety, when asked this important question prior to my MRI, I did answer yes because they give you Ativan, a beautifully mind-numbing, pain-forgetting narcotic, which I willingly intravenously accepted. After 4 days, my concerned mother, who was always sneaking peeks at my chart during rounds, saw NO MORE ATIVAN written even more boldly than that next to my name.

It was good while it lasted.

Out of Dodge...

I've been out of the hospital since last Saturday, and my recovery has been slow. I'm still on high
doses of steroids, which my guy friends think have made me cuter ("less gaunt" in the face is a compliment I guess).
I just see a puffball, but carefully applied bronzer is a magical mask. And I take narcotics designed for neurological pain, which help a little bit, but not much, and with the steroids, I don't even get to experience the narcotic high.

Bummer.

Mobility is not my strength right now. The right side of my body doesn't work very well. I walk with a cane that I punked out with a studded belt, and I can't walk for long. Think 10-minute blocks rather than 10-minute miles. So I'm sticking to my 2-block radius for now, which happens to be the best 2-block radius in Philadelphia.

I am so fortunate to have great, caring friends here in Philadelphia--some of whom I've met over my past 3 years here, some Pittsburgh transplants who I've known for more than a decade, and many whom I've met since I fortuitously moved into The Drake a year and a half ago. Everyone is reaching out and offering their support-from grocery shopping and cleaning my apartment to beauty treatments and relaxing dinners at one of the cozy restaurants by my building.

Anticipation

I've known for about 2 years that it would be likely that some time within the next 20 or so years I could have an autoimmune disease, and compared to how things have turned out, my little bit of early stage chronic kidney disease was like a pimple with a fantastic benefit—it kept me skinny.

I thought when I got my diagnosis of psoriasis a couple months ago, which as far as autoimmune diseases go and how it's affected me has been mild and not a huge inconvenience, the picture was complete.

The complete array of autoimmune diseases causing the transverse myelitis won't be diagnosed until Friday at the earliest when my final test results come back, or it could take years. But the big hurdle now is recovering from the transverse myelitis. I need to keep practicing positive thinking, but it's not coming to me as naturally as usual.

Doctor’s…and Mother’s Orders

I'm supposed to get a lot of rest (which is against my nature and even harder to do on steroids), avoid sick people, reduce my stress, and in the brilliant words or Dr. Schwartzmann (NOT my mother), have sex and vodka.

I like him.

Marci has also offered her intercontinental companionship for my wine-drinking therapy. And I thought I'd have to do it all on my own. Any other takers?

I'm working from home most days and my coworkers have been altruistic with rides to and from the office on the days that I go in. The two major drawbacks to my inability to travel right now are that I can't fly to Pittsburgh to meet my niece Lila Kai who was born this week and I'm not aloud[sic] (I’m pointing this out to demonstrate the cognitive challenges of transverse myelitis. As a writer and immaculate proofreader, I knew this wasn’t right, but I couldn’t connect my synapses to find the grammatically correct fix) to take my two-week solo Christmas through New Years Day Ecuador adventure.

I'm scared about the likelihood of total recovery, but I also (think I ) know that if anyone can do it, I can. I am a direct descendant of survivors of all kinds, and I have really high good cholesterol, so I should be good to go. And if I don't recover completely with the steroid treatment (I have about 3 more weeks), there's another treatment called plasmapharesis, which is a 1-2 week plasma transplant that will give me all new antibodies and could do the trick. My mom is also working on getting me an appointment at Johns Hopkins, which has the only transverse myelitis research center in the world.

Now Let’s Make a Difference?

Once I'm stronger, I plan to start advocating for other people with transverse myelitis (only 1300 people a year globally are diagnosed with this, and only about 30,000 people in the world have it). But for now, it's that hackneyed but oh-so relevant expression, one day at a time. (11.18.08 Ammendment: One moment at a time.)

I'm very lucky, and I need to remember this every day. One more week without treatment and I could have been paralyzed, as 50% of people with TM become, which is when most are first diagnosed.

AND on top of that…

I'm not the woman walking down 17th street cradling her bunny rabbit with a green bow around it's neck…I don't have a yappy republican Jersey-girl voice…I can afford to practice retail therapy (liberally)…and of course so many more meaningful things like having who I can only know to be the best family and friends in the world.

So thanks for giving me something to do while I can't sleep and thanks for being there.

xo,
Melanie

NOTE: This was is a slight revision of the first email I sent to friends and family after my first hospital stay for Transverse Myelitis.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.